Time is on my side

Time has been on my mind lately. How long has it been since I hugged someone upon greeting them? Seen my in-laws? My extended family? How long has it been since I ate out at a restaurant? How long has it been since I had a girls weekend? Went to a movie?

I really haven’t had to measure time recently because all of the measurements have been gobbled up by Covid. The time-stealing, red, thorny monster.

Since my friend died, I have been haunted by time. When did I see her last? When did I hug her last? Did she know I loved her? And further, when did I tell ANYONE outside of my immediate bubble that I loved them last?

My friend is from high school, as I’ve mentioned before. I had an extraordinarily privileged high school experience. We were idiots and didn’t appreciate it as much as we should have, and the majority of us should not even be trying to say otherwise. I attended a New England prep school, with both boarding and day students. There was very little diversity, crossover between day and boarding students, or socioeconomic variances. The academic rigor was unparalleled, and I was beyond prepared for college. We were on a college trajectory with no exceptions, and the pressure could be somewhat intense at times.

So this sounds kind of gross. It was the 80s, probably the height of privileged grossness. And there I was, in the mix. Not appreciating the mix, but there I was regardless.

I honestly don’t remember how I met my friend. She was a boarding student, so our paths never really naturally crossed. But she is as ingrained in my high school experience as anyone else. Also somewhat inexplicable, because I don’t know how she was excused from the dorms during all of our day student shenanigans. But, I digress.

Because she was who she was, she bridged the gap between boarding and day students. Because she didn’t really care for status, she just liked who she liked.

Tonight, I had the lovely experience of gathering with some of the people she liked from high school. Some of whom I literally have not seen since 1989, and I think I might have been scared of in the years we shared the same campus. Turns out they may have been intimidated by me as well. Me. What? High school is dumb.

There were brief moments of awkward silence, or perhaps just computer ineptitude, but I laughed, too. And I heard sweet affirmations of her kindness, extraordinary self-confidence and humility. Along with debauchery, rule-breaking and some questionable choices.

I knew my friend from one perspective. Thirty plus years later, I am glad to know the stories she was simultaneously living. In her death, I’m glad to be privy to them.

And in her honor, I love you. My classmates and renewly (that’s a word) discovered friends. And, I will hug you when I see you when stupid Covid is over. And I’m grateful.

She loved The Rolling Stones:

“Cause I got the real love…The kind you need…”

Ain’t that the truth.

P.S. Thank you, and I love you to my parents for sacrificing for me.

Of Cigarettes and Meatloaf

Oh, it’s been a long time since I’ve written here. (Raise your hand if your anxiety over the last year has been paralyzing? No? Just me?)

My friend died this week. She was my friend from high school. And we went to high school in the eighties, so we did all the stupid things together. With our other friends. And with people our age. Maybe just in general?

We went to Florida on spring break one year and decided it would be good to go on a cigarette diet. I mean, what could go wrong? I also really have no idea where the adults were, but somehow we smoked a LOT of cigarettes, drank gin and tonics by a pool somewhere and lost exactly zero pounds. I’m guessing this plan is not recommended by Ms. Craig, and we were pretty thin to start.

We spent a lot of weekends in high school smoking cigarettes somewhere. Parking lots. (Usually McDonald’s if we’re being specific. Something about the combination of the smell of fries and Marlborough Lights…) Dog pounds. Random people’s houses. Cemeteries. Balconies. Cars. Forests. Beaches. Tennis Courts. Golf Courses. Basements. Attics. Fields. No place was safe from our Bic lighters.

Smoking was social, then. So in those minutes it took to light a cigarette, smoke it and attempt to rid oneself of the horrible smell, there was time to talk. And talk we did. Yes, about the trivial aspects of being 17: prom, dating, clothes, gossip. It was in those moments, that our characters formed and our bonds were made. Our romanticized dreams were relevant. And possible. And important. Our realities had not yet been revealed

My friend loved my mother’s meatloaf. I know, rather an odd thing on which to focus. But over the years, it remained a point of conversation when we met. She operated in the details of life. The things no one really thought of as being relevant beyond a fleeting thought. Was there celery in the meatloaf, and how much? Or was it onions, and if so, what was the flavoring? Or was it both, and if so, was one cooked before the other? Were they raw? Sautéed? And sautéed with what? Butter? How much?

When she asked you a question, you were the meatloaf recipe. She dove head first into the minutia. Details to her, were the colors of a friendship bracelet and selected with earnest intention. It didn’t matter if you’d known her for years or minutes, the questions ensued.

Like for the teen working a summer job at the bagel shop on the Cape at 9 a.m, with a line up behind her. Oh, that made me sweat.

When we went to the U.S. Open, she said hello to everyone who helped us find our seats. Everyone she talked to in a store. Reading name tags and calling associates by name. Questions about sizes and colors, and comparable body shapes. She fielded calls from her kids. More questions about where so and so was to pick up the what what. And then left early because she had to get home for something, saying she’d just “hop on the bla, bla” highway or maybe the other “bla, bla” highway and be home. You know, because leaving the US Open in NYC during the late afternoon, should be totally without issue. Oy. But she just did it. Whirlwind. Whatever information she gathered had rendered her a solution and/or a goal. Done.

Having known her for thirty years, I came to realize that the questions were always followed by the pause. The pause could be squirmy. She was thinking. And she stared with big, blue eyes. Waiting. Waiting. Waiting. The pause was her compassion. The pause was her grace. And what followed the pause, well…it could be anything. A hard truth. A self-deprecating joke. A total subject change. A random relatable memory.

Holy crap, I miss her. I saw her but once or twice a year, but I still miss that she’s not in the world. I hate that she was sick, or that she suffered. I hate cancer, and that she had to fight so hard, only not to win. And be taken.

I’ll miss seeing her for coffee this summer. And laughing about how two fair-skinned women were drinking hot beverages in full sun…sweating…

Watching her walk away, happily smiling to herself. Looking in the shop windows.

Should We Stay or Should We Go?

I’m an 80s girl, and 80s music is sort of a theme for my life.  The Clash, being one of my 80s go-tos, sort of always churns through my brain.  Hence the title of this piece.  Please don’t sue me.

So if you are unaware, the federal law around special education (IDEA) says that students are the responsibility of the school district until they are 21.  While many students with special needs are not ready to leave the school district at the age of their typical peers, some are…with certain, specific supports.  Regardless of their readiness there is still the matter of how and where.  How will they transition and to where?

This week, we may have had one of Mark’s last IEP meetings with the school district.  He walked through his graduation, having exceeded the number of credits required, but we wanted the help of the school district in his transition.  We were offered a program not appropriate for him.  We were then offered a transition which allowed him to take classes at the high school as a post-grad, while matriculating as a college student.  You can imagine how this would not work, and the independent evaluator we hired said, “he is a man with no country” as he is stuck between these two entities.

At this week’s IEP Mark very strongly said he was done with the high school and his focus was on employment and succeeding in college.  OK.  We should respect that.

But crap. What does that look like?  I have no idea.

We asked the school district for transition opportunities – they directed us to a state held agency wait list. State resources, or the lack thereof,  are not the fault of the school district. Resources for the most vulnerable should not be something on the chopping block every legislative session, and if our legislators truly stand with our families…they would be sending this message loud and clear.   If our state is interested in the lives of ALL (as in pro-life), ensuring the lives of ALL should be a legislative priority.

So now we are faced with the decision of leaving the school district, because they can’t/won’t provide us with anything further, and which meets Mark’s needs.  Or not leaving the school district, because their kind of marginal plan is better than the lousiest plan our state has to offer, which also doesn’t meet Mark’s needs.

Would anyone else accept that for their neuro-typical student?  Kinda think, not.

So, why is this an acceptable option for students with IEPs.  Responses welcome.

 

Forward

I sat down at a meeting tonight, and one of the kindest people said, “I heard your husband was having some health problems.”

Ok. So let me just say right here that I am not awesome at dealing with crisis.  I  mean I take some meds which help be to be more even keel, but in a crisis I tend to go about trying to fix the problem – without breathing – for as long as the problem lasts.

Example.  Autism.  I’ve only started breathing in the last five years or so when I realized it was permanent, and ok, and we could forge a path.

Now. Robert’s heart issues.  And his blood pressure of one billion over one billion, or so it seemed.  And the related complications. With scary medical diagnosis and unfounded suggestions of medical conditions.  Infinite unknowns.  Frustrating medical care. Various med cocktails. And six days in the hospital.

So, when the nice man asked me about my husband, I had to excuse myself because I was about to lose it ALL, just right there. Full throttle.

So. I’m angry at him.  Robert, that is.  The heart stuff. Yep. Angry.

Judge me, or don’t. It’s how I feel. It’s valid for me. And, I’ll work through it. Or, I won’t.

One of my grandfathers died from a heart condition when I was three weeks old.  Over the course of my life time, I remember hearing that my Nana was so mad at him for leaving her that she got rid of almost all evidence of him.  This is the first thing that came to mind when Robert landed in the ER.

So, I just wanted to send a note to anyone feeling angry about a diagnosis…feel it.  It’s valid. You probably deserve to feel it.

But you, me…we…need to move forward.

I won’t press you on your forward, if you don’t press me on mine.  Unless you need it, and unless I do, too.

That’s all I know for right now. One foot in front of the other. Forward.

 

 

 

Raise Your Hand

If you’re about my age, you might remember a commercial for SURE deodorant, specifically it’s catchy tag line…”Raise your hand…Raise your hand, if you’re SURE!” (Apologies in advance for the ear worm.)

Raise your hand if you have a kid on the autism spectrum in college in their freshman year?

Yay! Woohoo! Waving hands in the air! Congratulations to you and to your child! Getting there sure was challenging sometimes…am I right? (Pretty big understatement, but moving on…)

Raise your hand if your college freshman with autism is struggling mightily with various aspects of college….and by struggling mightily, I mean they’ve ALWAYS struggled with these particular issues (finding sustainable friendships, fitting in, social cues, inference, communication, attention,  but now that the IEP may or may not be in place,  it’s kinda in your face, and kicking you in the gut.)

Uh yeah.  Hand raised, over here.Thought the nausea would stop after the first 15 years of the IEP, but here we are.

Raise your hand if your college freshman with autism is smart, capable, willing, kind, curious and generally kind of awesome.

Wooop! Yep! Raising my hand…want to hear more about how awesome he is?  I can tell you…he’s a great singer, and performer, and he’s SUPER funny…I can go on…

So I’m going to need you to come a little closer here, and pay attention.   People often don’t have a perspective on a thing, until the thing happens. So here’s my perspective and here’s the thing…college ain’t high school.  There are no modifications in college.  There are accommodations, but based on privacy laws and a whole bunch of other stuff…the bottom line, is that no one is going to help your kid unless he helps himself.  Yep. There it is.  Sounds harsh.  And it absolutely sucks.  But ignoring this will not help you. Or your kid.

College success depends on communication…actually, success in life kind of depends on communication, but I digress.  So this is the kick in the gut part, because our particular brand of autism is really communication focused.  Knowing what to say, when to say it, how to say it, how often, in what tone, in what format, to whom, and on and on.

If you are planning for post secondary education, put some plans in place NOW for advocacy and communication goals.

And if you are a parent sending your child to college, do this, but also establish conservator or guardianship first. Then sign all the paperwork necessary for you to talk to professors, tutors, financial aid, registrar, and anyone else who interacts with your child.  You may constantly walk the line of when to intervene, but at least you will have options.  And get to know the Accessibility Coordinator on campus.  Visit often.  Build a relationship. She is your go-to.

We are in finals week of Mark’s first semester.  He has encountered a professor for one of his core classes, who does not grade anything, until the end of the semester.  His reasoning is that he wants students to build a foundation, and have the opportunity to do so without the finality of a grade.  I kind of get that, but for a kid like mine…who relies on regular, measurable and tangible results for most aspects of his life, this is a complete nightmare.  And now, Mark is in the painful stage of playing catch up after having checked out for most of the semester.

Yes, some of this can happen to ANY student. But ANY student might recover.  Mine, might not because the entire experience he is trying to access, is almost completely unprepared to help him.

So we need to address students like mine. It’s the final frontier of his education. The Wild West if you will.   And it feels dangerous, and terrifying.

We have to do better.

Raise your hand if you’re in.

**** Shared with Mark’s editorial approval.

 

 

 

 

 

Cherish

As I write this, I am struggling to find a place to describe my high school experience.

I know this.  It was 100%, off the charts, a privileged New England, prep school experience.  Like stereotypically, gross.  Got it.

But my friends from the day…I hold them so dear.

We grew up together.  Like really grew up.

We got each other through tough times…times you might not think happen to privileged New England Prep School kids….

• Addiction
• Sexual Assault
• Death

Privilege is not perfect.  Nor is a life of privilege.

My privilege is that our friendships have survived and  in many cases, thrived.  We seek each other out and enjoy each others company.

I love that I have this experience. I cherish my people.

 

This is long. Dogs are good.

So before there was Eleanor, there was Bach.

And I really need to tell you the WHOLE story, for you to understand him and his place in our family.

When Mark was diagnosed with autism in 2003, we were given a window in which doctors said he would get the most benefit from therapies and interventions.  Given that medical advice, any parent would do anything within their means (and out of their means) to seek every and all therapies available…proven to be effective or otherwise.  We didn’t know the cause. We didn’t know the treatment.  We tried everything. At that point, we were all about mitigating autism and its’ impact.  I’m being honest. It was HARD, and we didn’t want it to be hard for Mark, or for his brothers.  I am not ashamed of experiencing that, or saying that.  It’s the truth.

Speech therapy.  Occupational therapy. ABA. RDI. Equine therapy. Gluten and casein free diets. Massage. Biochemical interventions. Meds.  Music therapy. Art therapy.  Two years post diagnosis we were broke.  With another baby, and one on the way.  Insurance covered nothing. NOTHING.

I was researching therapy dogs as our next intervention.  Mark never slept back then, and there was preliminary research about service animals helping children with autism sleep by providing sensory input. Mark loved animals.  Our whole family loved animals and Robert and I both grew up with pets.  There were organizations who required potential owners to spend a week with the dog in training.  Well that was unrealistic since Robert traveled and I was pregnant.  As quickly as I had shared my findings about Autism Service Dogs on social media, I received a call from a sorority sister who I had not seen since her graduation about twenty years prior.

She didn’t really  mince words.  And our quick phone call included her saying, “I’m going to get Mark a therapy dog.  I’m going to fundraise for it…”  And the rest was probably me crying.

A dog lover herself, Stella helped us find the right Autism Service Dog agency, which happened to be in Connecticut, where we lived at the time.  She interviewed the breeder, a mother to an autistic person herself.  The cost of adopting a pet would be eight thousand dollars, to include building a fence in our yard.  There was absolutely no WAY we could afford that.  Stella was undeterred and set up multiple fundraising events around the country to benefit the mission of bringing Mark a service dog. We saw so much generosity from our community, it was staggering.  People can be good.

And so, the most adorable golden retriever puppy came in to our lives.  And Mark named him Bach, after his favorite composer.

Bach wore a service vest.  He could go to therapies with Mark. He could go to restaurants and hotels. When Mark went to bed, he would go with him and nuzzle right up next to him so that Mark couldn’t turn in his bed, ultimately providing Mark with the knowledge of where he was in space.  Mark slept.  It was truly amazing.

Over the next several years, Bach would go to bed with Mark first.  When Mark was asleep, he would go to the baby’s room (Cornelius) and sleep on his floor, and then move to Erv’s room, who was in the beginning stages of being diagnosed with ADD and having a lot of trouble settling in.  Bach slept with Erv the whole night.

In the first few years of his life, as many Goldens do, Bach developed an allergy to just about everything.  He then developed a thyroid condition. We tried to manage with appropriate foods and meds, but he was still struggling.  Bach was such a popular guy, people offered to watch him while we vacationed. Particularly if they were entertaining getting a pet.  (I’m quite sure anyone who had Bach as their standard for a pet, was let down by their actual pet.)  After one stay, he came back to us having gained a significant amount of weight and began to drink from the toilets, a behavior far beyond his refined social skills.

He was then diagnosed with diabetes.  Over the next few months, we battled to get his diabetes under control.  With insulin injections and walks, and me making him chicken and eggs and low carb meals.  Simultaneously, a job offer in Wisconsin arose for our family.  We couldn’t regulate Bach’s diabetes, to the point that he was falling down our stairs and I had to call our town’s fire department to come pick him up and help me get him in the car for the vet.  It was bad.  Traumatic for everyone. Robert had accepted the job in Wisconsin, but we didn’t know what to do with Bach.

One vet suggested putting him down.  One vet suggested driving him to our new home.  We knew he wouldn’t make it we took him with us.

One vet offered to take him.

On December 4th, I took the boys to school with Bach in the minivan.  I made them say goodbye to him, without letting on that I would be taking him to the vet forever.  They hugged him as they always did.  Nothing different.  Their love was consistent, as was his.

I brought him to the vet. Signed the papers for his adoption.  Sat on the floor of the vet hugging him and crying, as the staff comforted me.  I knew I was doing the right thing, but, it was a crappy, rainy day.  I walked out seeing his face at the door.  And feeling like absolute shit.

And then we moved.

We knew a new dog was in our future immediately upon our move.

Welcome, Eleanor.

The sassiest, most enthusiastic, optimistic and hilarious dog to cross our path.  She was not a replacement, she was an addition to our family. She is the counter Bach.

We moved back to Connecticut last year to discover that Bach was still alive.

Today, his vet offered us the opportunity to see him and say a potential good-bye as Bach struggles with hip issues. We loved on Bach today.  I sat down on the floor with him and he nestled in my lap.  I was covered in his Golden fur and so happy about it.

We all had tears in our eyes as we were reunited. We are confident he remembered us.  As I’m writing this, Eleanor is nudging me to pet her under my desk.

Here’s the takeaway. The stereotype that those with autism lack emotion…hogwash.  Mark bawled his eyes out today.  We all did. He said he was happy.  He asked who was cutting onions.

Stereotypes are lazy. And uninventive.  Autism does not disqualify a person from feeling.  Perhaps it requires a search for a person to relate to the right feeling, the right thing.  Maybe, in such a vitriolic world, dogs are our saving grace. Or maybe it’s something else. Let’s not right anyone off.

Dogs are patient, loving and tolerant of our human flaws. They care not about politics, or religion or social circles.  They just want to love us, and be loved.

Such a simple thing. I wonder if we have over analyzed love.

Regardless, hug a dog today.  They get it.

I Have No Idea What I’m Doing

I haven’t written in a while…life has been a complete whirlwind of unprocessable (that’s totally a word) moments, and I haven’t found the words to do them justice.  So, I’ve just written nothing.  I’ve just BEEN in some of the experiences. I think I’ve been over-joyed, depressed, stressed out, proud, angry, hopeful and terrified at various points throughout each day this summer.

So the crux of this is that Mark graduated from high school, we became conservators of his estate which involved a whole scary (but not so much in actuality) process with Probate Court, and he is going to start college part-time.

Can you hear me in the back row? Do I need to say it again?

All of this is a big deal.  A huge deal.  A supercalifragilisticexpialidocious deal. Get it? Please read all of my other blogs if you do not. 🙂

So fast forward to today.  I met a new neighbor.  Mark and I went over with a delicious cake I didn’t make, to introduce ourselves.  It was lovely.  Mark was starting to dominate the conversations with what might be perceived as extraneous stories about the details of his theater career, and who played what role, and details about cast members’ height, and what other roles they had played, and where, and when…and all of a sudden I was out of my body realizing that maybe our new neighbor wouldn’t really care to hear all of this. What? This is just Mark. These are the conversations we have.  They are “normal.”

And the battle of potential ableism and respecting Mark’s privacy raged in my head.

Would I let Mark just be accepted for who he was, or would I try to control the narrative?

But what if…for just a second…we assumed that those with autism had just as much right to chatter, as anyone else.  And God knows, we all know someone who just goes on and on…As neuro-typicals, we tolerate that.  Maybe even accept it. But we always try to label it.  To justify it.  What if we just let it be?

Welp, I decided to control the narrative.  I discussed it with Mark, who approved.  So, I think I at least did that part right.

I told our neighbor Mark was on the autism spectrum, needed to pace a lot outside and would likely be singing show tunes at the top of his lungs all the while.  The neighbor said, “You know, we heard some singing yesterday and thought it sounded pretty good. Glad to know where it’s coming from.”

I felt guilty. I still do.

It’s not really anyone’s business as to his medical diagnosis.

I’m used to controlling this narrative.  To being his advocate. To being his voice.

I guess I’m wrestling with his identity and where I fit in to it. Imagine that?  After all these years. Maybe this isn’t so different from what parents of neuro-typical kids feel? (Ok, it’s totally different, but maybe there’s some commonality.)

I’m just being honest here. He might not be struggling, but I am.  That’s on me. As a mother, I want to protect him from ridicule, but maybe simply because of my own fears…or maybe that’s naive.  Again. Imagine that? After all these years, you’d think I would know.

But I really don’t.  Even at this major turning point into adulthood, I just don’t.

Now that Mark is 18…it is ultimately not my right to disclose his disability. I’m  used to controlling the narrative…his narrative.  I think now it’s my job to teach him how to control his own.  Which is both amazing and terrifying.

Mark starts college tomorrow.  He’s in a good place.  I know he will be a force in this world, simply by being who he is.

Maybe it’s time for me to force myself to step out of the way.  Mark will always need support, but maybe the best support I can give him at a very minimum, is my unconditional belief in his success, however he defines it.

OK. For today, I’m going with that.

 

Non-inclusive Inclusion

“I’d like to thank the students in X Classroom for folding the programs. And I’d like to thank the students who work with our special education students.”

That’s what he said. After the end of the year school performance.  He said it.

I listened to this as my son, in special education, had just crushed a solo from a Broadway show and had received a standing ovation. I also listened, as everyone in the school knew X Classroom and who is there.

I was stunned.   Enraged. I watched Mark on stage, knowing he understood his label of special education, and wondering how much it hurt him to think that his peers needed thanks for being with him.

I looked around to see if anyone shared my shock.

Nope. Audience was clapping away. Patting themselves on the back for being inclusive, was all I could think.

And yes, I realize my snark here.  But I really feel like people in my realm should know better.

The pushback is always, “this was coming from a good place.”  Which is true, and something I appreciate.  But it’s also coming from a place of outdated perspective, and self-proclaimed understanding. And most importantly, a misguided understanding of inclusive education.

Have I been explaining it wrong? If that’s the case, what can I do?

Inclusion is not a place. It’s not a classroom from which you draw inspiration.

Inclusion is not sympathetically hanging out with someone at certain events, and then not inviting them to your lunch table.

Inclusion is not temporary. Or momentary. Or charitable.

It is a lifestyle.

It is a moment taken to recognize a person’s heart, skill or talent.

It is a moment taken to share an interest.

It is a moment taken to recognize common interest, and rights to pursuing that interest.

Inclusion is fairness, and equality, and shared acceptance.

So how do we do better?

I can’t summarize a happy little essay because it requires so much more thought and discussion.  I’d like to know who is in?

~ Kate

 

 

 

It’s Ok but it’s hard

Just a quick note to my people.

I see you.

It’s the end of your kid’s senior year in high school.

Your kid should be graduating age wise, but is not.  Your kid should be going to Prom, but is not.  Your kid should be working a summer job, and hanging out, but is not.

I see you.

We are going to be ok.  We will figure it out.

What we don’t figure out, we will identify and  correct.

Please know that we are all here.  Watching the milestones go by.  Grieving for them, but celebrating our own victories.   In the way they are achieved.

I am freaking out, Silently and otherwise. Carry on. xo

Kate